UCD Patient Videos

You may have a rare condition, but you're not alone.

Are you feeling that family and friends don't understand what it's like to live with a urea cycle disorder? We can help you connect with patients and families who have been there. If you'd like to talk with another UCD patient or caregiver, sign up to speak with one of our UCD Mentors. Watch the videos below to learn from others living with urea cycle disorders. Learn about starting RAVICTI® (glycerol phenylbutyrate), how RAVICTI works, and how to take RAVICTI. There are also real life stories from UCD patients and caregivers and introductions to our UCD Mentors.

RAVICTI is used in adults and children 2 months of age and older for long-term management of high levels of ammonia in the blood (hyperammonemia) caused by a urea cycle disorder. RAVICTI must be used along with a low-protein diet and, in some cases, dietary supplements. RAVICTI should only be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI is not used to treat extremely high levels of ammonia in the blood (hyperammonemic crises) in people with UCDs as they may require rapidly acting medication. It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.

Managing a UCD

See how RAVICTI helps to remove excess ammonia from the body.

Read transcript

A urea cycle disorder, also known as a UCD, is a genetic disease that people are born with.

As the body digests protein in food throughout the day nitrogen is released and it circulates in the body in the form of ammonia, or NH3.

Normally most of the ammonia is converted to urea in the liver and the body gets rid of it via the kidneys in the urine.

However, in people with a UCD, ammonia is not as effectively turned into urea and can build up to toxic levels. And spread throughout the body, including the brain.

An ammonia-removing medicine may be needed to help bind to ammonia so it can be safely removed from the body.

RAVICTI may help.

RAVICTI is an oral liquid ammonia removing medicine that is taken 3 times daily. And keeps working in your body throughout the day.

When a dose of RAVICTI travels through the body it is not released right away.

A naturally occurring enzyme found in the digestive tract slowly unlocks RAVICTI so it can be absorbed and start working to bind and remove excessive ammonia.

Once unlocked, RAVICTI is slowly released and converted to the active substance that binds nitrogen, so that it can control ammonia levels when given as indicated.

IMPORTANT SAFETY INFORMATION

Approved Uses for RAVICTI® (glycerol phenylbutyrate) Oral Liquid
RAVICTI is a prescription medicine used in adults and children 2 months of age and older for long-term management of high levels of ammonia in the blood (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI must be used along with a low-protein diet and, in some cases, dietary supplements. RAVICTI should only be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone.

RAVICTI is not used to treat extremely high levels of ammonia in the blood (hyperammonemic crises) in people with UCDs as they may require rapidly acting medication.
It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.
It is not known if RAVICTI is safe and effective for children younger than 2 months.


Detailed Important Safety Information

Who should not take RAVICTI:
Children younger than 2 months should not take RAVICTI because they may not be able to digest it. Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have symptoms of an allergic reaction, such as wheezing, shortness of breath, cough, low blood pressure, flushing, nausea, or rash while taking RAVICTI.

RAVICTI may cause serious side effects:
The breakdown of RAVICTI produces the byproduct phenylacetate, which may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI: sleepiness; lightheadedness; change in taste; problems with hearing; confusion; problems with memory; worsening of numbness, tingling, or burning in your hands or feet; headache, tiredness; nausea; or vomiting.

What are the possible side effects of RAVICTI?
The most common side effects of RAVICTI in adults include diarrhea, gas, headache, nausea, vomiting, tiredness, decreased appetite, and dizziness.

The most common side effects of RAVICTI in children ages 2 to 17 years include stomach pain, nausea, vomiting, diarrhea, decreased appetite, and headache.

The most common side effects of RAVICTI in children ages 2 months to younger than 2 years include decreased level of a type of white blood cell, vomiting, diarrhea, fever, decreased appetite, cough, nasal congestion, runny nose, and rash.

Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects.

Before you take RAVICTI:
Tell your doctor if you have liver or kidney problems, pancreas or bowel (intestine) problems, or any other medical conditions. Tell your doctor if you are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. Tell your doctor if you are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

Talk to your doctor about participating in a UCD registry. The purpose of this registry is to collect information about people with UCDs to improve care. For more information about the registry program, call 1-855-823-2595 or visit www.ucdregistry.com.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

This information is not comprehensive. To learn more, talk to your healthcare provider or pharmacist. The FDA-approved product labeling, including the Medication Guide, can be found at Ravicti.com.

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“My daughter Mya has been on RAVICTI for almost 6 years and we continue to like the convenience"

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Starting RAVICTI: Patricia & Isaac's story

Patricia & Isaac's Story

"I first learned that I had a urea cycle disorder when my son was diagnosed. For the first time, so many unanswered questions finally made sense." -Patricia Experiences may not be typical. UCDs can manifest in different ways and at different times in a patient's life.

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"You can do this. There are many people like myself who are here ready to help." Experiences may not be typical. UCDs can manifest in different ways and at different times in a patient's life.

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"There’s no one who really understands unless they've done that and been there." Experiences may not be typical. UCDs can manifest in different ways and at different times in a patient's life.

Real Life Stories

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How RAVICTI Works

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See how RAVICTI helps to remove excess ammonia from the body.

RAVICTI for Babies and Toddlers

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See how RAVICTI can help control ammonia levels for children 2 months and older

How to Take RAVICTI

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Important Safety Information And Approved Uses For RAVICTI® (glycerol phenylbutyrate) Oral Liquid
Who Should Not Take RAVICTI: Children... Children younger than 2 months should not take RAVICTI because they may not be able to digest it. Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest...

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Important Safety Information And Approved Uses For RAVICTI® (Glycerol Phenylbutyrate) Oral Liquid

Who Should Not Take RAVICTI:

Children younger than 2 months should not take RAVICTI because they may not be able to digest it.

Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have symptoms of an allergic reaction, such as wheezing, shortness of breath, cough, low blood pressure, flushing, nausea, or rash while taking RAVICTI.

RAVICTI May Cause Serious Side Effects:

The breakdown of RAVICTI produces the byproduct phenylacetate, which may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI: sleepiness; lightheadedness; change in taste; problems with hearing; confusion; problems with memory; worsening of numbness, tingling, or burning in your hands or feet; headache, tiredness; nausea; or vomiting.

What Are The Possible Side Effects Of RAVICTI?

The most common side effects of RAVICTI in adults include diarrhea, gas, headache, nausea, vomiting, tiredness, decreased appetite, and dizziness.

The most common side effects of RAVICTI in children ages 2 to 17 years include stomach pain, nausea, vomiting, diarrhea, decreased appetite, and headache.

The most common side effects of RAVICTI in children ages 2 months to younger than 2 years include decreased level of a type of white blood cell, vomiting, diarrhea, fever, decreased appetite, cough, nasal congestion, runny nose, and rash.

Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects.

Before You Take RAVICTI:

Tell your doctor if you have liver or kidney problems, pancreas or bowel (intestine) problems, or any other medical conditions. Tell your doctor if you are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. Tell your doctor if you are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

Approved Uses and Important Safety Information for RAVICTI® (glycerol phenylbutyrate) Oral Liquid

RAVICTI is a prescription medicine for people with UCDs who are at least 2 months of age and cannot manage their UCD with diet and supplements alone. RAVICTI must be used with a low-protein diet. RAVICTI is not used to treat extremely high levels of ammonia in the blood (hyperammonemic crisis) or for NAGS deficiency.

Indication for RAVICTI Oral Liquid

RAVICTI® (GLYCEROL PHENYLBUTYRATE) ORAL LIQUID INDICATIONS AND USAGE

APPROVED USES FOR RAVICTI® (GLYCEROL PHENYLBUTYRATE) ORAL LIQUID

RAVICTI is a prescription medicine used in adults and children 2 months of age and older for long-term management of high levels of ammonia in the blood (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI must be used along with a low-protein diet and, in some cases, dietary supplements. RAVICTI should only be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone.

Limitations Of Use

RAVICTI is not used to treat extremely high levels of ammonia in the blood (hyperammonemic crises) in people with UCDs as they may require rapidly acting medication.

It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.

It is not known if RAVICTI is safe and effective for children younger than 2 months.

Talk to your doctor about participating in a UCD registry. The purpose of this registry is to collect information about people with UCDs to improve care. For more information about the registry program, call 1-855-823-2595 or visit www.ucdregistry.com.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

This information is not comprehensive. To learn more, talk to your healthcare provider or pharmacist. The FDA-approved product labeling, including the Medication Guide, can be found at RAVICTI.com.

Important Safety Information And Approved Uses For RAVICTI® (Glycerol Phenylbutyrate) Oral Liquid

Who Should Not Take RAVICTI:

Children younger than 2 months should not take RAVICTI because they may not be able to digest it.

Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have symptoms of an allergic reaction, such as wheezing, shortness of breath, cough, low blood pressure, flushing, nausea, or rash while taking RAVICTI.

RAVICTI May Cause Serious Side Effects:

The breakdown of RAVICTI produces the byproduct phenylacetate, which may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI: sleepiness; lightheadedness; change in taste; problems with hearing; confusion; problems with memory; worsening of numbness, tingling, or burning in your hands or feet; headache, tiredness; nausea; or vomiting.

What Are The Possible Side Effects Of RAVICTI?

The most common side effects of RAVICTI in adults include diarrhea, gas, headache, nausea, vomiting, tiredness, decreased appetite, and dizziness.

The most common side effects of RAVICTI in children ages 2 to 17 years include stomach pain, nausea, vomiting, diarrhea, decreased appetite, and headache.

The most common side effects of RAVICTI in children ages 2 months to younger than 2 years include decreased level of a type of white blood cell, vomiting, diarrhea, fever, decreased appetite, cough, nasal congestion, runny nose, and rash.

Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects.

Before You Take RAVICTI:

Tell your doctor if you have liver or kidney problems, pancreas or bowel (intestine) problems, or any other medical conditions. Tell your doctor if you are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. Tell your doctor if you are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

Approved Uses and Important Safety Information for RAVICTI® (glycerol phenylbutyrate) Oral Liquid

RAVICTI is a prescription medicine for people with UCDs who are at least 2 months of age and cannot manage their UCD with diet and supplements alone. RAVICTI must be used with a low-protein diet. RAVICTI is not used to treat extremely high levels of ammonia in the blood (hyperammonemic crisis) or for NAGS deficiency.

Indication for RAVICTI Oral Liquid

RAVICTI® (GLYCEROL PHENYLBUTYRATE) ORAL LIQUID INDICATIONS AND USAGE

APPROVED USES FOR RAVICTI® (GLYCEROL PHENYLBUTYRATE) ORAL LIQUID

RAVICTI is a prescription medicine used in adults and children 2 months of age and older for long-term management of high levels of ammonia in the blood (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI must be used along with a low-protein diet and, in some cases, dietary supplements. RAVICTI should only be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone.

Limitations Of Use

RAVICTI is not used to treat extremely high levels of ammonia in the blood (hyperammonemic crises) in people with UCDs as they may require rapidly acting medication.

It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.

It is not known if RAVICTI is safe and effective for children younger than 2 months.

Talk to your doctor about participating in a UCD registry. The purpose of this registry is to collect information about people with UCDs to improve care. For more information about the registry program, call 1-855-823-2595 or visit www.ucdregistry.com.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

This information is not comprehensive. To learn more, talk to your healthcare provider or pharmacist. The FDA-approved product labeling, including the Medication Guide, can be found at RAVICTI.com.